November 2010

Bracing for the Revolution: The Institute for Genome Sciences and Policy at Duke University

Robert Cook-Deegan, who heads up the institute’s Center for Genome Ethics, Law and Policy (GELP), echoes Burke’s assessment. “A lot of schools say they have interdisciplinary institutes,” he says. “But, I think it’s a testament to Hunt and Duke University that we really strive for that here.”

Cook-Deegan, a former physician and molecular biologist who switched to a policy career after doing an American Association for the Advancement of Science science and technology policy fellowship, highlights his own center in those feelings; despite being somewhat different than the other five IGSP centers in that GELP’s mission is not focused around laboratory work— though his center does carry out independent research projects— he feels that GELP is given equal status with the rest of IGSP.

And, this is important, because among all of IGSP’s parts, GELP provides that extra spark that helps make IGSP a unique fixture among academic centers.

“Duke certainly wasn’t alone last decade in seeing that genomics was the next big wave barreling in to shore,” Willard points out. “But, most research places seemed fixated on the impact of genomics strictly from a health and medicine perspective.”

“We weren’t going to try to out-Broad the Broad Institute,” he adds. “So, instead, Duke saw an opportunity to carve out a niche in merging the genome sciences with genome policy.”

For more information on regulating direct-to-consumer genome sequencing, see the feature article titled “The FDA versus Personal Genetics Firms” in this issue of ASBMB Today.

At GELP, Cook-Deegan and his colleagues, a group that includes individuals trained in policy, law, business, bioethics and genetic counseling, follow the IGSP motto of “Ask Big.” Their goal is to analyze questions emerging from the world of genetics and genomics that matter in the real world— for example, how companies that offer direct-to-consumer genome sequencing should be regulated— to help people make better decisions. Given that genome policy falls under such a big umbrella, GELP has specialized in a few key topics such as intellectual property, informed consent and consumer genomics.

It’s not a “think tank” per se, though Willard and Cook-Deegan hope that some of the research that comes out of GELP could be used positively by those in policymaking positions— and perhaps soon, for as big an impact as genomics has made the past few years, the next incoming wave is even bigger.

“As recently as a year ago, we only had a handful of complete human genomes sequenced,” says Cook-Deegan, “but even now, scientists are sequencing hundreds every week, and all the speculation of the $1,000 genome is becoming reality.”

“And, once that’s completed, I think it will open the floodgates and completely change how we look at, interpret and value our genetic data.”

Nick Zagorski ( is a science writer at ASBMB.

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